Research, information and consent for the Australian Health Survey: a separate standard for Indigenous people?

In reply: I thank Dr Rowley and Mr Thorpe for their response.1 It is hard to justify exclusion of any Australian from opportunities to participate fully in important initiatives on the recommendation of bodies whose membership sometimes has no direct link to the persons affected. There is no other population group in Australia to whom this applies.

Medical and clinical approaches should complement initiatives to address critical social and cultural issues; they are not in competition nor mutually exclusive. The inclusion of health measures in the adult (but not youth) components of the Australian Health Survey (AHS) acknowledges that there is much to be learned and remediated clinically.

Any interpretation of the deliberate exclusion of Indigenous youth from the “measures” elements of the survey is unsettling. There is more, not less, to be learned from this group. Their exclusion deprives policymakers of robust evidence that could improve health status. It condemns enquiry to the current sidestream method of short-term research projects on small pockets of people. These sometimes yield results of dubious generalisability and cause ongoing competition for the impossibly stretched research dollar. Alternatively, is it implied that Indigenous parents are less able to make sound decisions on their child’s participation or that the minors are less likely to cooperate?

I suggest that the matter of participation in the AHS be aired through general media channels, as well as those with an Indigenous focus, such as “Living Black” (SBS television) and Imparja television, and through local Indigenous radio stations and community networks. With a developed sampling frame for Indigenous people, dialogue about elements of the examination should at least be conducted with the specific individual tribal groups or communities, if not with the targeted individuals (the preferred option). Subsequently, the whole issue of representation to policymakers in Indigenous health matters might be re-examined on a national basis.